Wheelchair Woes

So I was really happy.

I finally after nine weeks+ had two working wheelchairs. My manual for the house (and the little bit out the house I use it for) and an absolutely amazing new powerchair that – teething problems aside – blows my mind.

Only my manual had been making a really terrible noise intermittantly along with moments of not feeling right.

I had no idea what was wrong with it and it was so intermittant that I didn’t see the point of calling the NHS maintenance team. I just knew they’d come out and it would be working fine at that point and it would be a waste of time.

Then it started getting worse and I was had a vague idea what it might be. But it wasn’t constant even if it was happening more often.  I decided I was going to have to call them but I’d leave it until some vague after I got my new powerchair time. I couldn’t cope with no wheelchairs of my own.

When the tech brought my powerchair out he moved the manual for me and spotted the problem. He told me what it was and said to get it sorted soon before it worsened as if it did I’d be stranded.

So I called them gave them a vague description and they agreed to come today.

Yesterday it deterioriated to the point I couldn’t use it. I couldn’t really move and I’m not sure how I limped it the 2 or so metres to my powerchair. I was just pleased I was in my bedroom when it went.

Mum came round and we both thought that it was beyond repair. It’s relatively old for a wheelchair (almost 7 years) and we could see the part that had broken was rusty.

I was like “four days?! I only get four days free from wheelchair problems?!” and I cried. I also warned everyone that I was unlikely to be going sailing as no manual = no sail.

Then I called the maintenance team to warn they it wasn’t useable.  I started explaining and he said “Is this Emma Crees?” This isn’t the first time he’s done that when I’ve called, I must be memorable or something!

I told them I didn’t think it was fixable and I was worried about being left with no manual chair. I knew if that happened they’d loan me one but I also know that my chair is a nonstandard size so thought the warning best.

He was absolutely admanent that he knew what was wrong with it, he’d tell the guy coming out, they’d have the part in stock and would make sure it was on the van ready. It was fixable and it was fixable here.

Fast forward to this morning and I’m reading my book by the window. The tech has my chair out by the van working on it. I can see him from the corner of my eye and I’m vaguely wondering what he’s doing because it looks more involved than I expected. This is concerning me.

He came back in and he was like “Your backrest was loose so I tightened it. I fixed your thoracic support and I tightened your footplate too.”  I was really pleased (especially as that thoracic had been broken for aaaaaages as I thought I’d need to go to the hospital to get it fixed as they’ve previously been considered too specialist for the mobile team and who could be doing with that?) but none of those were what I’d called him for so I was still waiting for the other shoe to drop.

He didn’t have the correct part to fix my broken castor (turned out I’d lost a bearing), the one he had was the wrong size. He’d put it on but it wasn’t sitting “right” so he’s ordering the correct size and will be back.

Not only do I have a fixed wheelchair, I have a wheelchair that’s in better condition than it’s been in over a year. And I got to go sailing too.

Here’s hoping that troubleshooting the new powerchair goes just as well tomorrow and I can truly have no wheelchair woes!

A Dream Is A Wish Your Heart Makes…

I’ve been doing a fair amount of writing (fiction) and the character I was writing about was thinking about the disney version of Cinderella. Specifically the song lyric “A dream is a wish your heart makes when you’re fast asleep.” And then I started thinking about it.

I frequently remember my dreams. They are very detailed and often borderline surreal. I can remember dreams I had months or years ago although not usually when I had them. I also have a recurring dream. I’ve not had it for absolutely ages but it was the one that came to mind. I think taking baclofen might have something to do with the way my dreams are – although even as a young child in my medicationless days I still remembered some of my dreams. But I think I read somewhere that baclofen can cause nightmares in young children? So it wouldn’t be too much of a stretch to think it’s got something to do with the way my dreams are. (Side note I wrote half of this entry then came back to finish it a week later. During that time another CPer brought up the baclofen weird dreams thing so it seems I’m not the only one)

Anyway my recurring dream is that I’m out somewhere, it could be anywhere and usually is a different setting each time I dream it. And I’m not in my wheelchair. I’m walking around. Whatever’s going on in the dream is happening and all is good. But then in the dream I suddenly remember that I can’t walk. The dream is derailed (I think last time I was in a shopping centre and trying to find somewhere to buy a sandwich) and I spend the rest of it hunting around, crawling or more likely shuffling on my tummy (as thats what I actually have to do if I don’t have a mobility aid) in a bit of a panic looking for my wheelchair. This is always a dream and as yet has never taken the form of a nightmare but every few months I’ll have a variant of it.

So when a dream is a wish your heart makes when you’re fast asleep came to mind I started wondering what wish that dream could represent.

My first thought (and it was one I didn’t like) was whether it could be construed as a secret wish to be able to walk. I imagine that’s what a lot of people reading this would take it to be. Especially those who knew me back in the days when I was a long distance manual wheeler and short distance walker but who don’t see me often now.

I can stand. I can take a few steps when I transfer and very very very rarely if the stars align meaning I both need to and I’m having an amazing day at the same time I can walk a few metres with a walker (specifically, for the curious, I have a rollator). Yesterday and today were the first days that happened since the first week in January.

I’m really glad I have the level of mobility I do. I work hard with the help of my family to maintain that. But walking is exhausting, it’s painful and the risk of a fall and injury is always lurking unseen. Plus, I have no balance so I can’t do or carry anything when I’m on my feet. If I’m in my chair I have less pain, it takes less energy, my seating support means my balance is much less of an issue. I can do things and be independent in a way that I never could without my wheelchair.

In the past almost 13 years since I went to uni I’ve gone from using a walker inside and a manual outside through using a manual all the time to my current set up where I use my manual in the house and a couple of other places and use my powerchair if I’m out. There are small changes I’d like to make – I at times miss my mad wheeling skillz I had with my manual in my uni days – but walking isn’t one of them. For someone like me walking really is overrated.

No what I think the dream represents is a feeling of safety and independence. Because as well as giving me independence my chair makes me feel safe. I can move much quicker, safer and easier. I can react if I need too. When there was an argument outside my flat right a few days ago I delayed going to bed until it stopped. I felt I needed my mobility just in case.

And most of all it represents being whole. Because my wheelchairs are a part of my body. And a huge part of me. So maybe dreaming that I’ve lost it and panicking until I find it is about being accepted. By others and by myself.

>Details on my new seating

>Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up – and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over – and that the only stops on the way home were the ones we wanted to make.  I’m very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It’s a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren’t level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I’m honest in the past two weeks I’ve found they weren’t raised high enough – must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that’s not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn’t as easy – I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn’t right for me.  We won’t talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn’t realised it was that much.  Cue the OT commenting that that might be why it wasn’t very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn’t get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I’ve also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I’m not sure if that’s meant to be the case with swing away laterals or not.  It’s a little annoying if I’m honest but I could see it as something that’s meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt – if it moves when I’m not deliberately reaching over then I realise that I’m tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it’s two foam wedges with velcro on them placed between the plastic shell of the backrest and it’s cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I’ll believe that when I see it (it working I mean) but I’m willing to try it.  I think they’re called Skate Shoes but googling can’t find them.  It’s something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they’re shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I’m having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn’t in the past it didn’t work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn’t think it would work as I have enough trouble putting shoes on and wouldn’t be able to put these things on too.

At the moment I’m not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn’t thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair… I’m thinking it probably won’t prove to be necessary. Sadly.

I’m loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.